eLIXIR: Born in South London

  • Research type

    Research Database

  • IRAS ID

    325260

  • Contact name

    Tisha Dasgupta

  • Contact email

    tisha.dasgupta@kcl.ac.uk

  • Research summary

    eLIXIR, Born in South London: Early Lifecourse data Cross-Linkage in Research

  • REC name

    South Central - Oxford C Research Ethics Committee

  • REC reference

    23/SC/0116

  • Date of REC Opinion

    2 May 2023

  • REC opinion

    Favourable Opinion

  • Data collection arrangements

    As part of your maternity care at Kings Health Partners (Guy’s and St Thomas’ Hospital and Kings College Hospital) doctors, midwives and other health care professionals record information about you and your health in your health records. Some of these are in your handheld maternity notes but many more are kept in NHS computer systems.A system has been developed that enables us to link these health records from the different computer systems and to carry out research using information from King’s College Hospital, Guys and St Thomas’ and South London and Maudsley NHS Trusts, which would help us follow health across pregnancy and childhood in large numbers of women and children in South London. This system is called eLIXIR. This information has been linked with other health care data from your GP records and national hospital data, along with data from national immunisation, and from national fertility treatment records. Researchers wanting to look at specific health issues will develop a plan (protocol). This will be approved by a committee including scientists and members of the public before relevant information from the database is released to the researcher to answer that particular question. We will use limited identifiable data, such as your NHS number and date of birth to link your data with your baby’s, and to combine the information about your pregnancy and your baby’s health from different computer systems. eLIXIR will then transform information so it becomes totally anonymous. This means that your clinical data can be used in research but your personal details cannot. The computer removes or covers up any information that can identify you. Your name and baby’s name and address will be removed and your full date of birth and baby’s date of birth and postcode are made shorter. All data will be stored in accordance with the Data Protection Act 2018 at the Clinical Data Linkage Service at South London and Maudsley NHS Foundation Trust.

  • Research programme

    The aim of eLIXIR is to provide information about health in pregnancy and across the life span in a large number of people to help us work out when and how health problems begin and what treatments work in some people and not others. Here are some of the things we hope to look at: • How mothers’ physical or mental health in pregnancy may affect their babies. • How to improve the health of babies who are born too early. • Some mothers can get diabetes in pregnancy. Our research may help us find ways of making sure this does not affect the baby. • How being unwell in early life might affect children’s mental and physical development. • Which treatments of common conditions in pregnancy are best for mother and baby. • Maternal mental health following fertility treatments • Understanding and improving vaccination trends in pregnant women

  • Research database title

    eLIXIR, Born in South London: Early Lifecourse data Cross-Linkage in Research

  • Establishment organisation

    The South London and Maudsley NHS Foundation Trust

  • Establishment organisation address

    Biomedical Research Centre (BRC) Nucelus, Mapother House

    The Maudsley Hospital

    Denmark Hill, London

    SE5 8AF